Autism Speaks is the world's largest autism advocacy organization that sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public.[1] It was founded in February 2005 by Bob Wright, vice chairman of General Electric, and by his wife Suzanne, a year after their grandson Christian was diagnosed with autism.[2] In April 2009, it became the national philanthropy of Alpha Xi Delta.
Spearheaded by the Wrights, the organization attracted a powerful board of directors, "world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon", and became a powerful lobbying voice in Washington. In April 2010, the organization named Yoko Ono its first "Global Autism Ambassador."[3] Since its founding, Autism Speaks has merged with three existing autism organizations and raised millions of dollars for autism research.[2]
Since February 2009, Autism Speaks has used the Wubbzy character from Wow! Wow! Wubbzy! as a mascot.[4]
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Autism Speaks is an autism advocacy group that, along with its predecessor organizations, has been an important source of funding research into causes and treatment of autism spectrum disorders; it also conducts awareness and outreach activities aimed at families, governments, and the public.[1] In a 2006 press release, Autism Speaks stated as its goal "to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increase awareness of the disorder; and to improve the quality of life of affected individuals and their families".[5]
Autism Speaks and its predecessor organizations have strengthened public awareness for autism research, raised funds directly for research, and lobbied Congress to leverage the privately raised money with much greater public funds. From 1997 to 2006 their advocacy in the areas of treatment and environmental factors shifted research priorities in the U.S. from basic research to translational and clinical research, with less emphasis on the underlying biology and greater emphasis on putting what was known to practical use.[6]
Autism Speaks supports research in four main areas:[7]
Autism Speaks funds the Autism Genetic Resource Exchange (AGRE), a DNA repository and family registry of genotypic and phenotypic information that is available to autism researchers worldwide.[8] The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now.[9]
Autism Speaks funds the Autism Tissue Program, a network of researchers that manages and distributes brain tissues donated for autism research. These donations are rare and are a vital component of research into the causes of autism.[10]
Autism Speaks supports the Clinical Trials Network, which focuses on new pharmacological treatments. It also supports the Toddler Treatment Network, which develops new interventions for infants and toddlers.[7]
Autism Speaks believes that vaccines have been shown to be safe for the vast majority of children, and that vaccines are important for preventing serious diseases such as measles and mumps. It recognizes that some individuals may have adverse reactions to, or respond poorly to, vaccines, and advocates research into identifying any subgroups of such individuals and mechanisms behind any such reactions.[7] This has strained relations between the Wrights and their daughter Katie, the mother of an autistic boy. Katie believes her son's autism was caused by thiomersal, a preservative that was formerly common in children's vaccines in the U.S.; no major scientific studies have confirmed this hypothesis.[2]
The Walk for Autism Research program conducts an annual autism walk on Long Island, New York; the walk attracted 20,000 participants in October, 2006, and raised $2 million.[11]
Suzanne Wright appeared on NBC's The Today Show to discuss the Ad Council campaign launched in conjunction with Autism Speaks to raise autism awareness and to highlight the importance of early detection.[12] The Today Show aired a week-long series of stories in February, 2005, highlighting autism research and treatment.[13]
Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[14] Thierry accused Autism Speaks of not paying her for her work on the feature version of the film; Autism Speaks asserted that Thierry was paid in full.[15] Autism Speaks staff member Alison Singer was reportedly criticized for a scene in which she said, in the presence of her autistic daughter, that when faced with having to place the girl in an inadequate school, she contemplated driving her car off a bridge with her child in the car. Thierry said that these feelings were not unusual among the non-autistic mothers of autistic children.[16]
Autism Speaks, through a series of mergers, has combined organizations that funded peer reviewed research into genetic causes, championed alternative theories and therapies, and advocated for individuals with autism.[2]
In early 2006, a year after its founding, Autism Speaks merged with the National Alliance for Autism Research (NAAR).[17] NAAR, founded in 1994, was the first U.S. nonprofit organization dedicated to supporting research into causes, treatment, and cures for autism spectrum disorders.[18] The founders comprised a small group of parents, including two psychiatrists, a lawyer and a chemistry professor.[19]
NAAR raised money to provide research grants focusing on autism, and had committed an excess of $20 million to over 200 autism research projects, fellowships and collaborative programs—more than any other non-governmental organization. NAAR focused intently on its role in establishing and funding the Autism Tissue Program, a post-mortem brain tissue donation program designed to further autism research studies at the cellular and molecular level. Other major programs included the 'High Risk Baby Sibling Autism Research Project', and the 'NAAR Genome Project'. NAAR also published the NAARRATIVE, a newsletter on autism biomedical research.
In 2007, Autism Speaks completed its merger with Cure Autism Now (CAN).[20] CAN was founded in 1995 by Jonathan Shestack and Portia Iversen, the parents of a child with autism whose story is told in the book Strange Son. It was an organization of parents, doctors and scientists devoted to research to prevent, treat and cure autism.[21] Iversen and Shestack were invited to join NAAR's board but declined, impatient with what they considered NAAR's excess of caution in staying with the scientific establishment.[22] In 1997 CAN established the Autism Genetic Resource Exchange; CAN was successful in establishing AGRE despite an initially negative reaction from scientists who were concerned whether CAN could carry out rigorous work, and despite what CAN considered to be scientists' reluctance to share their data.[22] During its existence, Cure Autism Now provided more than $39 million for research grants and other programs. Its flagship programs included the AGRE, Autism Treatment Network, Clinical Trials Network, and Innovative Technology for Autism. It also funded education and outreach efforts.[20]
Autism Speaks is also allied with Autism Coalition for Research and Education, an advocacy group.[2]
Autism Speaks assigns a high priority to research into whether immunization is associated with autism risk, and this high priority has raised concerns among parents and researchers.[23]
Alison Singer, a senior executive of Autism Speaks, resigned in January 2009 rather than vote for committing money to new research studies into vaccination and autism. The U.S. Interagency Autism Coordinating Committee, of which Singer was a member, voted against committing the research funds; this was contrary to the Autism Speaks policy on vaccine safety research. Singer said:
She said that numerous scientific studies have disproved the link first suggested more than a decade ago and that Autism Speaks needs to "move on."[24] Later that year, along with NAAR's cofounder Karen London, Singer launched the Autism Science Foundation (ASF), a nonprofit organization supporting autism research premised on the principles that autism has a strong genetic component, that vaccines do not cause autism, and that evidence-based early diagnosis and intervention are critical.[25]
Eric London resigned from Autism Speaks's Scientific Affairs Committee in June 2009, saying that the argument that "there might be rare cases of 'biologically-plausible' vaccine involvement ... are misleading and disingenuous", and that Autism Speaks was "adversely impacting" autism research. London is a founding member of the ASF's Scientific Advisory Board.[26]
Autism Speaks's advocacy has been based on the view of autism as a disease, a view shared by many but not all autism scientists.[27] In contrast, some autism activists have asserted that people with autism are different but not diseased, challenging the conceptualization of autism as a medical condition.[27]
In January 2008, an autistic blogger upset with some charities' portrayal of autism created a critical parody of the Autism Speaks website, and later took the site down in response to legal demands from Autism Speaks to stop using the Autism Speaks name and logo without permission. Autism Speaks claimed the spoof could confuse people looking for information about autism. New parody sites were later launched by Gareth Nelson, founder of the autism rights group Aspies for Freedom.[28]
In September 2009, Autism Speaks screened the short video I Am Autism at its annual World Focus on Autism event; the video was created by Alfonso Cuarón and by Autism Speaks board member Billy Mann. With narration closely resembling the 1954 short Taming the Crippler, which personified poliomyelitis as a kind of grim reaper figure, I Am Autism has been criticized by autism advocates and researchers for its negative portrayal of autism.[29][30]
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